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The Lymphoma Guide Information for Patients and Caregivers The Lymphoma Guide Information for Patients and Caregivers Ashton, lymphoma survivor This publication was supported by Revised 2016 A Message from Louis J. DeGennaro, PhD President and CEO of The Leukemia & Lymphoma Society The Leukemia & Lymphoma Society (LLS) is the world’s largest voluntary health organization dedicated to finding cures for blood cancer patients. Since 1954, we have invested more than $1 billion in research specifically targeting blood cancers to advance therapies and save lives. We will continue to invest in research for cures, programs and services to improve the quality of life for people with lymphoma. We know that understanding lymphoma can be tough. We are here to help and are committed to providing you with the most up-to-date information about lymphoma, your treatment and your support options. We know how important it is for you to understand your health information. We want you to be able to use that information, along with the help of members of your healthcare team, on your pathway toward good health, remission and recovery. Our vision is that one day all people with lymphoma will be cured or be able to manage their disease and have a better quality of life. Until then, we trust the information in this Guide will help you along your journey. We wish you well. Louis J. DeGennaro, PhD President and Chief Executive Officer The Leukemia & Lymphoma Society Inside This Guide 2 Introduction 3 Resources and Information 7 Part 1—Understanding Lymphoma About Marrow, Blood and Blood Cells The Immune System About Lymphoma Finding the Right Doctor Ask Your Doctor Pretreatment Considerations 12 Part 2—Hodgkin Lymphoma Signs and Symptoms Diagnosis and Staging Treatment Stem Cell Transplantation Childhood Hodgkin Lymphoma 21 Part 3—Non-Hodgkin Lymphoma Signs and Symptoms Diagnosis and Staging Treatment Stem Cell Transplantation Childhood Non-Hodgkin Lymphoma 34 Part 4—About Clinical Trials 35 Part 5—Side Effects and Follow-Up Care Side Effects of Lymphoma Treatment Long-Term and Late Effects Follow-Up Care Tracking Your Lymphoma Tests 39 Take Care of Yourself 40 Health Terms 43 Healthcare Question Guides This LLS Guide about lymphoma is for information only. LLS does not give medical advice or provide medical services. The Lymphoma Guide I page 1 Introduction Lymphoma is a blood cancer that develops in the lymphatic system, an important part of our immune system, which fights off diseases in our bodies. Hodgkin lymphoma and non-Hodgkin lymphoma are the two main types. About 90 percent of people with lymphoma have non-Hodgkin lymphoma (NHL). The rest have Hodgkin lymphoma (HL). Some types of lymphoma are curable. For other types, many patients are able to keep their disease under control and have good quality of life with medical treatment. Progress in treating lymphoma gives patients more hope than ever before. There are an estimated 788,939 people either living with, or in remission from, lymphoma in the US. This number includes {{About 181,967 people with Hodgkin lymphoma {{About 606,972 people with non-Hodgkin lymphoma The Lymphoma Guide has sections with information for all types of lymphoma, for Hodgkin lymphoma and for non-Hodgkin lymphoma. A key at the bottom of each page shows you whether the section has L Lymphoma information HL Hodgkin lymphoma information NHL Non-Hodgkin lymphoma information Some words in the Guide may be new to you. Check Health Terms beginning on page 40. Or, call our Information Specialists at (800) 955-4572. page 2 I 800.955.4572 I www.LLS.org L Resources and Information The Leukemia and Lymphoma Society (LLS) offers free information and services for patients and families affected by blood cancers. This section of the Guide lists various resources available to you. Use this information to learn more, to ask questions and to make the most of your healthcare team. For Help and Information Consult with an Information Specialist. Information Specialists are master’s level oncology social workers, nurses and health educators. They offer up-to-date information about disease, treatment and support. Language services are available. For more information, please {{Call: (800) 955-4572 (Monday through Friday, 9 a.m. to 9 p.m. ET) {{Email: [email protected] {{Live chat: www.LLS.org/informationspecialists. Free Information Booklets. LLS offers free education and support booklets that can be read online or ordered. For more information, please visit www.LLS.org/booklets. Telephone/Web Education Programs. LLS offers free telephone/Web education programs for patients, caregivers and healthcare professionals. For more information, please visit www.LLS.org/programs. Co-Pay Assistance Program. LLS offers insurance premium and medication co-pay assistance for eligible patients. For more information, please {{Call: (877) 557-2672 {{Visit: www.LLS.org/copay Sign Up for an e-Newsletter. Read the latest disease-specific news, learn about research studies and clinical trials, and find support for living with blood cancer. Please visit www.LLS.org/signup. L The Lymphoma Guide I page 3 Community Resources and Networking Online Blood Cancer Discussion Boards and Chats. Online discussion boards and moderated online chats can help cancer patients reach out, share information and provide and receive support. For more information, please visit www.LLS.org/discussionboard and www.LLS.org/chat. LLS Community. LLS Community is an online social network and registry for patients, caregivers, and supporters of those with blood cancer. It is a place to ask questions, get informed, share your experience and connect with others. To join visit www.LLS.org/community. LLS Chapters. LLS offers community support and services in the United States and Canada including the Patti Robinson Kaufmann First Connection Program (a peer-to-peer support program), in-person support groups and other great resources. For more information about these programs or to contact your chapter, please {{Call: (800) 955-4572 {{Visit: www.LLS.org/chapterfind. Other Helpful Organizations. LLS offers an extensive list of resources for patients and families. There are resources that provide help with financial assistance, counseling, transportation, locating summer camps and other needs. For more information, please visit www.LLS.org/resourcedirectory. Clinical Trials (Research Studies). New treatments for patients are under way. Many are part of clinical trials. Patients can learn about clinical trials and how to access them. For more information, please call (800) 955-4572 to speak with an LLS Information Specialist who can help conduct a clinical-trial search. Advocacy. The LLS Office of Public Policy (OPP) engages volunteers to advocate for policies and laws that encourage the development of new treatments and improve access to quality medical care. For more information, please {{Call: (800) 955-4572 {{Visit: www.LLS.org/advocacy. page 4 I 800.955.4572 I www.LLS.org L Additional Help for Specific Populations Información en Español (LLS information in Spanish). For more information, please visit www.LLS.org/espanol. Language Services. Let your doctor know if you need a language interpreter or other resource, such as a sign language interpreter. Often, these services are free. Children’s Concerns. Parents of a child with lymphoma may want to talk to members of their child’s healthcare team about how to find enough time for everything, pay for treatment and best help their children. For more information, see the free LLS booklet Coping With Childhood Leukemia and Lymphoma. The Trish Greene Back to School Program for Children With Cancer. This program helps doctors, nurses, parents and school personnel work together to help a child with cancer smoothly return to school. For more information, contact your LLS chapter or call (800) 955-4572. Information for Veterans. Veterans with lymphoma who were exposed to Agent Orange while serving in Vietnam may be able to get help from the United States Department of Veterans Affairs. For more information call the Department of Veterans Affairs at (877) 222-8387 or visit www.publichealth.va.gov/exposures/agentorange. World Trade Center Survivors. People involved in the aftermath of the 9/11 attacks and subsequently diagnosed with a blood cancer may be able to get help from the World Trade Center (WTC) Health Program. People eligible for help include {{Responders {{Workers and volunteers who helped with rescue, recovery and cleanup at the WTC-related sites in New York City (NYC) {{Survivors who were in the NYC disaster area and those who lived, worked or were in school in that area {{Responders to the Pentagon and the Shanksville, PA crashes. L The Lymphoma Guide I page 5 For more information, please {{Call: WTC Health Program at (888) 982-4748 {{Visit: www.cdc.gov/wtc/faq.html. People Suffering from Depression.Treating depression has benefits for cancer patients. Seek medical advice if your mood does not improve over time, for example, if you feel depressed every day for a two-week period. For more information, please {{Call: National Institute of Mental Health (NIMH) at (866) 615-6464 {{Visit: NIMH at www.nimh.nih.gov, enter “depression” in the search box. Feedback. To provide your opinion of this Guide please visit: www.LLS.org/publicationfeedback. Want more You can view, print or order the free LLS booklets information? Hodgkin Lymphoma and Non-Hodgkin Lymphoma at www.LLS.org/booklets or contact our Information Specialists for copies. page 6 I 800.955.4572 I www.LLS.org L Part 1 Understanding Lymphoma Lymphoma is the general term for many different types of blood cancer. Non-Hodgkin lymphoma and Hodgkin lymphoma are the two main types. About Marrow, Blood and Blood Cells The definitions in this section about normal blood and marrow may help you understand the lymphoma information in the rest of this Guide. Bone marrow is the spongy center inside the bones, where blood cells are made.
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